Jesy Nelson and her fiancé, Zion Foster, have shared devastating news about their 8-month-old twin daughters, Ocean Jade and Story Monroe Nelson-Foster, who have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare and severe genetic condition. This diagnosis will undoubtedly have a significant impact on their family, and many readers will be eager to learn more about SMA and its effects.
Understanding Spinal Muscular Atrophy (SMA)
Spinal Muscular Atrophy (SMA) is a rare genetic condition that affects every muscle in the body, including legs, arms, breathing, and swallowing. SMA Type 1 is the most severe form of the disease, causing muscle degeneration, leading to symptoms such as floppiness in the limbs, difficulty breathing and swallowing, and delayed motor skills. According to medical experts, SMA is a life-threatening condition that can be fatal if left untreated, with a life expectancy of less than two years.
The exact cause of SMA is still not fully understood, but it’s known to be caused by a genetic mutation that affects the production of a protein called survival motor neuron (SMN) protein. This protein is essential for the survival of motor neurons, which are responsible for transmitting signals from the brain to the muscles. Without enough SMN protein, motor neurons degenerate and die, leading to muscle weakness and wasting.
The Diagnosis: Jesy Nelson’s Daughters
Jesy Nelson’s daughters, Ocean Jade and Story Monroe, were diagnosed with SMA Type 1 after months of testing and “gruelling” hospital appointments. Their parents became concerned when the twins weren’t showing expected movement in their legs and were struggling to feed properly. The diagnosis was made at Great Ormond Street Hospital in London, where doctors told Nelson that her daughters “probably will never be able to walk” and “will be disabled”.
The Impact on Jesy Nelson and Her Family
The diagnosis has had a significant emotional impact on Jesy Nelson and her family. As a new mom, Jesy is now acting as a nurse to her daughters, performing tasks such as putting them on breathing machines, which is taking a toll on her mental health. In an emotional update, Jesy shared that she’s “so grateful” for the treatment her daughters have received, which she describes as “lifesaving”. The treatment aims to slow down the progression of the disease and improve the twins’ quality of life.
The family is facing a long and challenging journey ahead, with the twins likely to require lifelong care and support. Jesy Nelson and her fiancĂ©, Zion Foster, are undoubtedly facing a huge adjustment, but they’re determined to do everything they can to give their daughters the best possible life. As Jesy shared, “I’m just trying to take it one day at a time and focus on making sure my girls are happy and healthy.”
Supporting Families Affected by SMA
For families affected by SMA, it’s essential to have access to the right support and resources. There are several organizations that provide support, advice, and care for families living with SMA, such as the Spinal Muscular Atrophy Association (SMA Association). These organizations offer a range of services, including counseling, advocacy, and access to specialist care.
The Road Ahead: Treatment and Management of SMA
The diagnosis of SMA Type 1 in Jesy Nelson’s twin daughters has undoubtedly been a challenging and emotional experience for the family. However, with the right treatment and management, it is possible for children with SMA to lead fulfilling lives. Gene therapy and SMN protein replacement are two of the most promising treatments for SMA. In 2019, the FDA approved Zolgensma, a gene therapy treatment that has been shown to improve motor function and survival in children with SMA. Additionally, nusinersen (Spinraza) and risdiplam (Evrysdi) are two RNA-based therapies that have been approved for the treatment of SMA. These treatments work by increasing the production of SMN protein, which can help to slow or halt disease progression.
| Treatment | Description | Approval Status |
|---|---|---|
| Zolgensma | Gene therapy treatment | FDA-approved (2019) |
| Nusinersen (Spinraza) | RNA-based therapy | FDA-approved (2016) |
| Risdiplam (Evrysdi) | RNA-based therapy | FDA-approved (2020) |
Supporting Families Affected by SMA
The emotional and practical challenges faced by families affected by SMA cannot be overstated. Jesy Nelson has spoken publicly about the emotional toll of her daughters’ diagnosis, and the importance of having a strong support network. The Muscular Dystrophy Association (MDA) and The SMA Foundation are two organizations that provide critical support and resources for families affected by SMA. These organizations offer a range of services, including financial assistance, counseling, and access to specialized care.
For families affected by SMA, it’s essential to connect with others who understand the challenges and complexities of the condition. Support groups, both online and in-person, can provide a safe and supportive environment for families to share their experiences and connect with others.
Raising Awareness and Promoting Research
Raising awareness about SMA and promoting research into the condition is crucial to improving treatment options and outcomes for families affected. World SMA Day, held annually on June 15th, is an opportunity to raise awareness and promote action on behalf of those affected by SMA. By sharing Jesy Nelson’s story and others like it, we can help to increase understanding and empathy for families affected by SMA.
According to the SMA Foundation, SMA affects approximately 1 in 6,000 births worldwide. While SMA is a rare condition, research and awareness efforts can help to improve treatment options and outcomes for families affected.
In conclusion, Jesy Nelson’s courage in sharing her daughters’ diagnosis with SMA has helped to raise awareness about this rare and complex condition. As we look to the future, it’s essential that we continue to support families affected by SMA, promote research into the condition, and advocate for increased awareness and understanding. By working together, we can help to improve treatment options and outcomes for families like Jesy Nelson’s, and ensure that they receive the support and care they need to thrive. For more information on SMA and resources for families affected, visit the Muscular Dystrophy Association (MDA) or the SMA Foundation.
